Symptoms there for good?

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Symptoms there for good?

Postby shortcake » Fri Oct 10, 2008 6:29 pm

Hi! This is only my second post here. I posted earlier today in the Introduction section.

I have been diagnosed with MS in June this year, and I've had tingling in my hands for months (about 6 or 7) and stiffness in my left leg for a month now.

I started taking Rebif 3 months ago, and since I have started it, that's when I got my lastest relapse (the leg stiffness). It has gotten worse this week.

I'm just wondering if the Rebif is helping at all, or if it's too early to determine?

Also, I'm wondering at this point if the symptoms will ever disappear or if more and more will keep appearing without the ones from before going away...

How long do people's symptoms (that do end up going away) usually stick around for? Can they be there for over a year and end up going away? Do you take anything else for them (other than the Rebif), if they are not "disabling"?

:cry:
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Postby ursula » Sat Oct 11, 2008 2:36 am

Hi,

rebif takes at least 3 months to work..
about your symptoms:
I also have a spinal lesion - had numbness up to the belly botton.
It took at least 10 months to disappear.
Also the symptoms from spinal lesions tend to come and go.
So you have to wait and see (and hope...)

Good luck!
ursula
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Postby TwistedHelix » Sat Oct 11, 2008 7:41 am

Hello shortcake,
You've hit upon probably the single most frightening and frustrating aspect of MS: its unpredictability. Even if somebody has a disease course which is strikingly similar to yours, you can't ever be certain that just because something happens, (or doesn't happen), to them, it will be the same for you.
Sad to say, uncertainty is just something you're going to have to come to terms with – but don't worry: you will, however unlikely that seems at the moment. That's not the same as saying it will go away: it will always creep up on you, especially when you're feeling tired or low.
Two sides to every coin, I suppose: uncertainty means that even when you're doing OK you can't be sure you'll feel the same tomorrow, but on the other hand it means that having a bad time needn't last forever, either.
The harsh truth is that there are no guarantees with drug treatments as well: different people respond in different ways to different drugs, so your daunting task is to pick through the options available – including all the various dietary and supplement regimens – and see if you can find something which seems to work for you.
There are many people here who will share their advice and experience, and over time you will come to learn how your particular variety of MS behaves,
Dom
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Postby cheerleader » Sat Oct 11, 2008 1:27 pm

Hey shortcake-
Welcome. Sorry you find yourself here, but hope you find some good information and encouragement. The incomparable Mr. doublehelix (Dom) said it all...unpredictability is a tough aspect of MS. But you will learn how to manage this.

My husband still has leg pain, spasms and fatigue from his first attack almost 2 years ago. He's found relief from pain in magnesium supp. (a zinc/mg/calcium tablet and Natural Calm powder) and lots of other supplements. You can read his program on the regimen section. ( I whole-heartedly recommend looking into nutrition and supplementation.) His symptoms come and go, depending on heat, stress, and amount of sleep - he's never "MS free" but he's found ways to deal. As you spend time on this board you will see you are not alone, and many people are here to help-
all the best,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby gwa » Sat Oct 11, 2008 5:21 pm

shortcake,

Rebif is not designed to make you better or stop a relapse. It supposedly helps you to have less frequent relapses, not NO relapses.

My first symptoms were optic neuritis and hands that went in all sorts of directions that I could not control. Those two things disappeared totally within a few months and I have not had those problems in over 36 years.

However, my right leg has always been weak from the beginning and has never gotten better, only worse as the years have progressed. So, it is very possible to have a mixture of symptoms and all are different as to when, if ever, they relent for you.

Trying to figure out this disease is impossible for now since no one knows what causes MS.

Go about your daily life and try to ignore as many problems as possible. You will soon develop a new "normal" for yourself.

gwa
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Postby MrsGeorge » Mon Oct 13, 2008 3:40 am

I've not been on Rebif but have been told that it can take 3-6 months to kick in.

As for symptoms.... it falls into that pit of 'no way of knowing' that is too common in MS. For me most of my symptoms are almost back to normal b4 the next relapse. I only had one on top of old symptoms which was my last relapse and it made life pretty difficult.

What's normal or your baseline physical ability might change but you'll be amazed at how much you adapt without realising it!
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Postby shortcake » Tue Oct 14, 2008 4:39 pm

Thank you all for your posts and words of encouragement.

I'll be reading the nutrition section and I'm sure I'll be learning lots!

:)
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